BackgroundThe past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practices and systems of governance. Given the growing international interest in this area this systematic review and thematic synthesis represents a timely review of current evidence. It highlights the key factors influencing public responses as well as important areas for further research.MethodsThis paper reports a systematic review and thematic synthesis of qualitative studies examining public attitudes towards the sharing or linkage of health data for research purposes. Twenty-five studies were included in the review. The included studies were conducted primarily in the UK and North America, with one study set in Japan, another in Sweden and one in multiple countries. The included studies were conducted between 1999 and 2013 (eight studies selected for inclusion did not report data collection dates). The qualitative methods represented in the studies included focus groups, interviews, deliberative events, dialogue workshops and asynchronous online interviews.ResultsKey themes identified across the corpus of studies related to the conditions necessary for public support/acceptability, areas of public concern and implications for future research. The results identify a growing body of evidence pointing towards widespread general—though conditional—support for data linkage and data sharing for research purposes. Whilst a variety of concerns were raised (e.g. relating to confidentiality, individuals’ control over their data, uses and abuses of data and potential harms arising) in cases where participants perceived there to be actual or potential public benefits from research and had trust in the individuals or organisations conducting and/or overseeing data linkage/sharing, they were generally supportive. The studies also find current low levels of awareness about existing practices and uses of data.ConclusionsWhilst the results indicate widespread (conditional) public support for data sharing and linkage for research purposes, a range of concerns exist. In order to ensure public support for future research uses of data greater awareness raising combined with opportunities for public engagement and deliberation are needed. This will be essential for ensuring the legitimacy of future health informatics research and avoiding further public controversy.

Abstractobjectives To synthesise evidence on women's experiences surrounding rehabilitation and reintegration after obstetric fistula repair in sub-Saharan Africa and explore recommendations from women and health service providers.method Systematic literature review of qualitative studies surrounding rehabilitation experiences of women in sub-Saharan Africa who have undergone obstetric fistula repair. Using a pre-defined search strategy, seven databases, relevant source publications and grey literature were searched for primary qualitative studies. Data from ten studies were collected, and thematic analysis based on the framework approach was used to analyse the findings.results The most important rehabilitating factor for women was fulfilment of social roles. Health service perspectives were more frequent than women's perspectives. Counselling and health education were the most common recommendations from both perspectives.conclusion Little qualitative evidence is available on rehabilitation after obstetric fistula repair in sub-Saharan Africa. Counselling services and community health education are priorities. Further research should emphasise women's perspectives to better inform interventions aimed at addressing the physical and social consequences of obstetric fistula.